Aaron's Hyper IgM Journey

Wednesday, November 21, 2012

German Donor

We found out today that Aaron's BMT donor is from Germany. I would have never guessed that. I did some Wikipedia research and found out that the Afro-German population is very small. A lot of this population is ethnically mixed. As a result of the genocide with WWII, Germany does not include race as a part of their census. Therefore, the exact Afro-German population is unknown. I would estimate this population to be 1-2% of the total German population. I find this interesting because bone marrow differs based on ethnicity. Considering Aaron's background, I would have expected to find his match in the US or Caribbean.

Unfortunately, Germany has a two year wait before the donor and patient can make contact. Until then, I can only send letters without any identifying information whatsoever. We will have to brush up on our German over the next year.

The not so great news... We will be spending the holidays in Cincinnati. :((((( We were hoping to work with St. Petersburg to do Aaron's photophoresis. We found out that they do photophoresis for children, but not as small as Aaron. Little children require a special machine and a donated unit of blood for the procedure. I asked our doctor if we could start looking for the next closest location. She does not want to look elsewhere at this time. All Children's Hospital in St. Pete wants to accommodate Aaron and begin using this procedure for their little patients. This means: buying the machine, training on the machine, and transferring Aaron's care. All of this sounds simple, but is not. The machine costs hundreds of thousands of dollars. A technician from the manufacturer has to come to St Pete to train the nurses and be present for the first two procedures of an actual patient (Aaron). AND it is the holidays. I don't foresee any of this happening any time soon.

This year for Christmas, I will be alone in Orlando while Aaron and Michael are in Cincinnati (I will start working full time in Dec). I don't even think we will be able to have Serena for the holidays at all. This is sad. However, tomorrow is Thanksgiving, so I am going to be thankful for all that we have instead of what we don't. We wanted Aaron to get photophoresis and he is. We wanted to have our son alive and he is. Some day (hopefully soon), our family will be home again with the children playing like children should.